No More IEP Meetings!

Today Mike and I attended our last IEP meeting. Yippee!  I counted 47 IEP meetings, at least, since 1997.  Two of our younger four boys had varying disabilities, ranging from speech impairment to autism.  Both of them, Stuart and Cameron, have sufficiently progressed to function as neuro-typical kids!  The other two, Ryan and Nick, still have autism, but their progress is no less remarkable!

So what is an IEP?  Basically, it's a written contract in which educational goals are written for the individual with special needs.  Its focus is to educate the individual person, geared towards the issues and abilities of said person.  IEP stands for individual educational program.

These meetings can be stressful and grueling, or they can be uplifting and reassuring. HA.  They are usually grueling.

The participants are comprised of teachers, a psychologist, therapists, parents, and student, called the TEAM. Frequently, the school staff discuss the goals of the student before the meeting, though I don't think anyone would really admit to that.  When the meeting commences, the goals are already written.  If the parents agree with those goals, there is no problem.  If the parent disagrees, then PROBLEM.  It can become a battle or a downright WAR.

Sometimes our meetings would last three hours, and we'd have to postpone any conclusion.  Those were horrific.  Our child's needs were not being addressed appropriately, and as parents, we had to ensure they were.

And the paperwork!  I have four binders full.

Over the years, I learned that certain vocabulary terms were necessary to get what my child needed.  Also, what one school could do was different from what another school could do, even in the same district.  Some special ed classes were offered only at select schools.  The staff, depending how dedicated to the student, may or may not want to implement other goals.

Quite often, I felt like an intruder rather than a team member.  I always had someone else accompany if possible.  Whether it was my husband or father, having an advocate helped streamline the meeting.

Not all meetings were terrible.  Some could be pleasant, especially if I knew the staff.  Getting to know the principal, secretary, and teachers helped to get my children what they needed.  I volunteered a lot.  That made a huge difference, and my boys prospered.

So with this last IEP, all my boys are moving toward adulthood.  As they transition into the "real" world, my life also adjusts.  There are no contracts with employers or colleges.  I am concerned how my boys will progress, but as always, it's one day at a time.  Seeing how they have succeeded thus far, I am confident they will find their way, and I will find mine.

GOOD BYE, IEPs!

Nicholas in Hawaii

Nick greeted with flowers at the airport

Nicholas and Dad (Mike) are in Hawaii!  What a year it's been to get them there.

We found out last February that the marching band at Nick's high school was selected to represent the state of Arizona in Hawaii for the Pearl Harbor Memorial Parade.  Each ship, boat, or sub that was destroyed in Pearl Harbor on December 7, 1941 has a representative marching band in the parade.

What an honor!! These bands are selected based on competitions.  This year Nick's high school band placed third in the state competition.  Tons of hours practicing.  The band meets at 6am every weekday morning before school.  Then they have evening practices and weekend performances and competitions.  BUSY.

Marching in parade

Then the fundraising to get Nick there.  The school had several fundraisers, volunteers asking for corporate sponsorships, and families donating.  Nick wrote many letters to family and friends to help contribute to his account.  So this endeavor is the result of many.  MANY.

Once funding was successful, another contingency surfaced:  supervision.  We did not trust anyone with our child.  Sensory overload, dietary restrictions, and anxiety attacks are not to be left with any adult.  Mike and I had no idea how Nick would react being on a plane.  Personal space and tight quarters are not easy on anyone, let along a teen with autism.

I brought this up with the band teacher, citing the IEP accommodations and modifications.  The only acceptable solution was for Mike to be a chaperone.  I was told that "the IEP would be taken into consideration when choosing chaperones".  That did not give me any consolation.  Then came the email from the band booster president that a lottery would be held to pick chaperones.  I was completely on edge then.

After several correspondences with the band teacher and Nick's case manager, I made it clear that the only person who would be appropriate to help Nick was his parent.  A fellow class mate or another adult would not suffice.  ESPECIALLY if some emergency happened.  They couldn't just call us, and we'd be there within minutes or even hours.  This was a safety issue.

I am not sure what conversations were held on Nick's behalf when the selections of chaperones were picked.  When the list was publicized, Mike's name was on it.  Relief.  Now we had to come up with the funds for Mike.  As always, money was not going to stop us from pursuing something that would benefit Nick.  Lots of prayer and faith in that department, and the funding has materialized!!

So Nick and Mike are on an experience of a lifetime.   Yes, there's a lot of "behind the scenes" that I did to help make this work.  Lots of mental preparation for Nick.  Not just band practice.  Practice sitting in close confinement.  Practice talking softly.  Practice...

I think the effort is worth it.  Nick's smile says it all!

Autism: Paper Never Ends

I'm drowning in a sea of paper.  I sort.  I file.  I purge.  I shred.

I know science says that spontaneous generation doesn't occur, but every mom of a special needs kid knows otherwise!

I invest hours maintaining files, and I never seem to keep up.  My desk has files to be filed.  My table has mail to be sorted.  My counter has paper to go somewhere...

It's a thankless job, but worth doing.  Every step of every process demands proper documentation of diagnosis and prognosis.  Schools, doctors, insurance, and government might help IF the paperwork is complete.  The proper paperwork must always be filled out before anything is done.

Yesterday I talked with a counselor at the local community college regarding the potential enrollment of my autistic son.  The first words out of his mouth were, "Do you have proper documentation?"  I laughed, and I said, "How many years of documentation do you want?  I have every assessment, psychological evaluation, doctor's notation, specialist's recommendation, and school IEP since my son was three."  Silence followed.  He responded, "Well, most people don't have that much. I guess just bring the most recent."  Easy to do.

So as I keep this need for documentation in mind, I continue to sort, file, purge, shred. 

Frustrating Week

I received Ryan's IEP report.  There were inaccuracies in it.  What's worse, is that the state agency received the IEP before I did.  The state is satisfied with the IEP, and says that Ryan's case is ready to go to the "redeterming" board--or whomever judges that.

I was stunned.  Why would the state be willing to knowingly accept incorrect information when the status of his disability could be jeopardized?  I thought we agreed that we want what is best for Ryan.

Also, I pointed out to our state case manager that there was no psych report included in the IEP.  She seemed to ignore that.  She replied that the MET simply wasn't done.

I asked the school psychologist if there was a report forthcoming.  I received it the next day.  I then forwarded it to the state case manager.  Her response, "Oh, I didn't have that."  It seems she didn't pay attention to my pointing out that the report was missing.

Then there's trying to correct the wrong information.  No one knows who or what the source was for that info.  It's taken a few days, but I think it's been corrected.  I had to write to several people, but patience there has paid off.

This has spun more questions and controversies, though, so there were several more problems to solve.

Just goes to show why the puzzle piece is the emblem for autism.  As soon as you think you have something figured out, SURPRISE--there's another piece to fit into the puzzle of life.

Ryan Does Need Speech--Pragmatics

RING.  The phone goes off.  Inside of 30 seconds my day's activity is dictated.  All else fades.  I didn't take the call, but I listened to the message.  It is the high school psychologist, saying that we need to make a decision because she wants to write her report this week.  The IEP isn't until next Tuesday.

I'm confused.  Decisions are suppose to be made by the IEP "team".  I don't like this being rammed down my throat.  Especially since Mike and I don't agree with the decision to stop speech services for Ryan.

I discussed with Mike what points I should include when I speak to the speech pathologist. I decided to send an email for two reasons: I want to remain calm and to ensure I don't miss any details.  Mike read the email and assured me it had the high points.  Then Mike went to work.  I hate doing this on my own; alas, Mama Bear kicks in.  My son's potential is at stake.

Within ten minutes of sending it, I received a phone call on my cell. It was the speech pathologist. The timing was not good as I had an appointment.  She started of by saying, "Instead of reading your email, I saw that there were inaccuracies and we need to discuss this."  She just made my day!  She's NOT going to read the email.  She wants to talk NOW.

I am usually a cordial person, but I refuse to discuss this hastily.  I told her I'd call her back as soon as I could.  She insisted that we needed to make a decision asap.

I attended my meeting, and hurried home.  I called the district office to ask a simple question:  do I have to make this decision before the IEP.  IT was an unusual and odd for a school staff member to push for a decision BEFORE an IEP.

I spoke with the director of special ed department.  I asked about making this decision.  She told me how I could appropriately respond.  I also relayed my concerns about Ryan still needing speech.  After a quick discussion, I was armed with the correct vocabulary. I also verified that my "incorrect information" was, indeed, correct.  I then called the speech pathologist, and left a message about the correct information and what Ryan's speech needs were with the key vocabulary of "pragmatics".

The end result was ZING.  The speech pathologist acknowledged her error.  She read my email and "now understands".  She also agreed with the "pragmatics" and will write her report with new goals.  SUCCESS.

The above actually transpired through a few phone calls and emails throughout the entire day.  I felt I kept hitting a brick wall with the speech pathologist. I needed to be persistent, patient, and grounded which required lots of prayer throughout the day.  Prayers were answered.

Now we await the IEP report.

Nicholas: A Good Week

This week has been a good week. What a blessing! Makes me wonder if I was taking for granted all the other "good weeks" that we had...

A friend asked if "one of the boys has had a set back. I thought they were all doing so well." Yes, the boys were all doing well. I am not sure why Nick is regressing, or seems to be regressing.

One suspicion I have is teenage turmoil. How hard is it for a teen without autism to maneuver high school and puberty? I recall tough times. I have seen Nick's three older brothers, with and without autism, have tremendous struggles in transitions, friendships, and work loads.

Nick is a teen with autism. The autism effects his expressive and receptive language. Nick thinks in pictures, so his brain is firing like crazy to interpret speech and sound. Most kids his age may not have the patience to give Nick time to process what they say.

I brought up this issue at Nick's IEP meeting about two weeks ago. His speech pathologist recommends a program called Best Buddies. The psychologist and case manager said that they'd sign him up. I haven't heard anything so far, so tomorrow, Monday, I'll be calling the school to see what the status is. In this program NT (neuro-typical) kids signs up to befriend special needs kids, and they meet the kids for several social outings.

I am hopeful that the Best Buddies will help Nick through this time. However, this is one small piece that may fit the "puzzle" of autism.

I still am trying to figure out if there are any other issues at hand, but here's to Nick's perseverance!

photo credit:http://www.flickr.com/photos/sean-b/

The Battle Ends: Summer School Results

Summer school ended. Ryan and Nick both earned As in the computer class. Wish it were that simple!

The class was very frustrating for the boys and us. This class consumed our summer vacation time. We spent hours with the boys and their assignments. Ryan caught on fairly well, but Nick was extremely frustrated.

My husband and I shared Nick's frustration, but ours was directed at the teacher and administration. We met with the teacher and principal or vice principal several times. Our main concern was the content of the class, not the speed of the class. The course catalog described an introduction to the computer. Instead, this class demanded a creation of a small business, which entailed business plans and goals and much more. I won't go into the details here, but the frustration was really due to the administration focusing on the speed of the class, not content.

Before I had signed up the boys for this class, I had talked with numerous people at my boys' schools. I talked with counselors, psychologists, case managers, and teachers. They all agreed that this beginner computer class would help my kids throughout high school. It would also be a needed life skill. All were on board.

My husband conveyed this to the summer school hierarchy. The vice principal of the regular high school was called. (I assume this as we never saw her on the summer school campus.) She told the summer school principal that we never spoke with her.

I felt like I was thrown under the bus. After that call, the summer school administration refused to work with us, even though we had an IEP. They simply stated that "this is what we're going to do." We had no more say.

We could have hired an attorney and fought it. However, the energy and money to do so would have been more than we could generate. Maybe the school counted on that. My husband and I decided to spend that time and energy teaching the boys ourselves. THAT is why the boys earned As in that class.

This makes me rethink the home schooling vs public schooling. Parents always remain the primary educators, no matter what!

The Battle Begins: Trust The Parent?

The first Monday morning of summer school I went to the school early to talk with the computer teacher, Mr. L. I informed him that my two boys had autism and IEPs (Individual Educational Plans-- big name for the educational goals that teachers and parents set for the child). The teacher said that he would get everything from the computer. I offered my cell phone, and he replied that was on the computer too.

The first week of summer school passed. Nick was very frustrated. He had a D+. If anyone knows Nick, he or she would know something was terribly wrong. This is the child that is the perfectionist. Back in March he had one A+, three As, and one A-. He was NOT happy because he did not have straight As. The A- was not good enough. The next report card showed five As. Nick was happy.

So this D+ was not good.

Ryan had a B. Ryan is the one who can wait til the Earth fades before pulling out a book to study.

I tried to figure this out. I asked the boys several questions. I received some conflicting answers, but what was clear was that the special accommodations that were listed on the IEPs were not being implemented. Nick and Ryan are suppose to get extended time on assignments and tests. That was not happening. Nick needed that time.

The following Monday morning my husband and I showed up with copies of the accommodation pages from the boys' IEPs. Mr. L refused to accept the pages. He said that, since these papers did not come from the administrative office, he could not accept them. There were legalities involved.

I was stunned. NEVER in my life had a teacher refused these papers. In fact, teachers usually expressed gratitude, "Thanks. It usually takes the office days or weeks to get these to us."

Mr. L asked me if I understood. The Mama Bear in me challenged him, "No." I took a breath. "No, I don't. I've never had a teacher question my integrity before." I had to restrain myself...

My husband and I walked to the administration office, and we talked with the principal. She said, "You need to understand that we have 1300 students here. It's going to take time." I bit my tongue.

The next day I made an appointment with the vice principal and the teacher. The vice principal, Mr. Z, was a teacher that knew from Nick's junior high. When we arrived at the classroom, Mr. L was busy at the computer. We sat down. Mr. Z asked if I brought copies of the boys' IEP so he could read them. I laughed. Here is an administrator asking ME, the untrustworthy parent, if I had copies. He couldn't get copies from the computer in the administration office? He was going to TRUST ME, the parent? How daring!

The meeting was successful, but I couldn't get over the irony of the teacher vs the vice principal. One refusing the IEP from me, and the other wanting a copy from me.

Just another day in the life of being an advocate for my kids in the school system!

photo credit:TI CC-40 (Set: 30)

Ryan's Success in High School

One of the big decisions we made over the summer was to register Ryan at the public high school. He was home schooled for junior high, and he attended a transition program last year. He is a sophomore, and he is attending the local public high school. Although he has autism, he is mainstreamed in most of his subjects. Only biology and study skills are "resource classes", that is, special education.

We decided to try school on a weekly basis. Each Friday we evaluate Ryan's progress in academics, socializing, etc. The first day Ryan loved school. The second day he wanted us to take him out. I reminded him that we had a commitment of one week. Of course, if something unacceptable happened, we'd take him out immediately. That was not the case. Ryan just felt the transition was tough that day.

It has been four weeks now. I did have to ask the teachers for copies of notes, which I cited as "special accommodations" in his IEP. (Briefly, an Individual Educational Program (IEP) is a goal oriented program for special needs students, made for that specific individual by a team comprised of teachers and parents.)

Here is a synopsis of what the teachers have to say about Matt:

FROM HIS ENGLISH TEACHER:

Ryan did much better on his spelling test on Friday, earning a 22/24, so his extra studying definitely paid off. As far as class goes, I've been trying to get him copies of all lists and definitions so that he can study the terms exactly as they will be used on the tests. Other than that, he appears to be doing well in class.

FROM HIS BIOLOGY TEACHER:

Ryan is a joy to have in class. He works very hard.

FROM HIS MATH TEACHER:

Ryan has been doing fairly well in class. He is shy and quiet, but always paying attention. I do have to make sure he is writing down what we are going over in class sometimes. I have an itinerant in the classroom with me now, so we will do our best to keep Matt on task, especially with the note taking.

Conclusion: In the academic realm, Ryan is doing beyond what any of us imagined! Some of these comments almost had me in tears. No teacher has ever said that Ryan is a "joy" to have in class, or that he works hard. I truly consider this a miracle. If people could see what Ryan was like ten years ago to whom he is today, they would not believe him to be the same person! The hard road is worth the journey!